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Study: Teens and young adults respond well to learning about familial cancer risk

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Contents

At a glance What does this mean for me?
Study findings Questions for your doctor
Strengths and limitations Related resources

 

STUDY AT A GLANCE


What is this study about?

This study is about understanding how teens and young adults react to the knowledge of breast and ovarian cancer within their families.

Why is this study important?

People who have a family history of cancer or inherited mutations that increase their cancer risk face difficult decisions about when and how to tell their children about their family cancer history and/or inherited mutation. Little research has been conducted on the short- and long-term effects of this information on children’s well-being, so guidance for parents is limited. This study aimed to better understand how knowing about the risk for hereditary breast and ovarian cancer affects the health and quality of life of adolescents and young adults in high-risk families.

Study findings

The study sample included 272 adolescents (ages 12 to 17) and young adults (ages 18 to 24) whose mothers had undergone testing for a mutation 1 to 5 years before the study. Mothers who disclosed their status to their children were eligible to participate if their children had not yet undergone genetic testing.

All mothers had genetic counseling and testing:

  • 76% (207) were breast or ovarian cancer survivors.
  • 17% (47) tested positive for a mutation.
  • About 83% (225) tested negative for a known familial mutation or had an uninformative test result (a negative test result in an individual whose family members have not been found to have a clearly . The genetic risk status of such an individual must be interpreted in the context of their personal and family history.)
  • 88% (239) were white and 78% (213) had a college- or higher-level education.

Among adolescents and young adults in the sample:

  • 68% (184) were female.
  • 85% (230) non-Hispanic white.
  • About half were younger than 18 (ages ranged from 12 to 24 years old).
     

 

  Total

Maternal

BRCA-positive

Maternal

BRCA-negative or Uninformative

Adolescent and Young Adult demographics

272

47 (17%)

225 (83%)

Younger than 18 years old

135

21 (15%)

114 (85%)

Greater than 18 years

137

26 (19%)

111 (81%)

Female

184

29 (16%)

155 (84%)

Male

88

18 (20%)

70 (80%)

Non-Hispanic white

230

37 (16%)

193 (84%)

Black, Indigenous, People of Color

42

10 (24%)

32 (76%)

 

Researchers conducted a single telephone interview with the participants to assess three categories of behavioral and psychological factors:

  • Risk-reducing behavior
  • Cancer awareness
  • Quality of life

 

Children’s and young adults’ risk-reducing behavior

The researchers found no difference in the adolescents’ and young adults’ risk-reducing behaviors, such as limiting alcohol and tobacco use or increasing physical activity based on their mother’s cancer history, status or the child’s biological sex.

 

Children’s and young adults’ cancer awareness

On average, adolescents and young adults in this sample were knowledgeable about cancer, but they were not overly worried about their risk.

  • They reported low levels of worry about their mothers’ risk of developing breast and ovarian cancer.
  • They felt that their own risk for developing cancer was moderate.
  • They reported high levels of knowledge about cancer, including its prevention and causes.
  • They felt confident in their ability to take steps to prevent cancer, including age- and sex-appropriate screenings.
  • They considered healthy behavior to be moderately important in determining cancer risk.
  • They considered genes to be moderately important in determining cancer risk.
  • They placed importance on learning about genetic risk factors.

 

Children and young adults’ quality of life

In general, knowledge of participants’ cancer risk did not negatively affect their well-being:

  • They reported low levels of cancer-specific distress.
  • They reported low levels of depression and anxiety.
  • They reported moderate levels of general life stress.

Despite these promising overall findings, the researchers noted significant differences among the participants based on their age, biological sex, maternal genetic status and cancer history:

  • Adolescents reported more cancer-specific distress than young adults.
  • Young adults perceived higher personal risks of developing cancer than adolescents.
  • Females perceived their cancer risk as higher than what males perceived about their own risk.
  • Females reported more general life stress than males.

 

Children and young adults of BRCA-positive mothers:

  • were among the most concerned about their mothers developing breast and ovarian cancer.
  • believed most strongly in genes determining cancer risk and the importance of learning about such risk.

 

Children and young adults of cancer survivors:

  • female children of cancer survivors perceived themselves to be at higher personal risk of cancer than did males, regardless of their genetic status.
  • young adults and children of cancer survivors generally knew the most about cancer.
  • young adults and children of cancer survivors knew the most about the causes of cancer.

Strengths and limitations

Strengths

  • This study explores the under-researched area of how knowledge of familial cancer risk affects the quality of life and cancer awareness in younger high-risk relatives.
  • The sample size of 272 adolescents and young adults is relatively large compared to the size of other groups studied in previous research on this topic.

Limitations

  • This study only looked at the lifestyle behaviors of adolescents and young adults after—not before—they learned about their mothers’ test results. This limits our understanding of whether knowing about their mothers’ status decreased, increased or did not affect the concerns of adolescents and young adults.
  • Interviews with study participants were only done once, so it is not possible to make conclusions about change.
  • The majority of participants were white and had mothers who had attained education at or above the college level. As a result, these findings might not be generalizable to other racial and socioeconomic groups.
  • In this study, all mothers had genetic counseling before and after genetic testing. The results of this study may not extend to those who had genetic testing without genetic counseling.
  • The study only included participants whose mothers had been tested for . Incorporating participants whose fathers tested positive for , as well as healthy individuals, would further illuminate the quality of life and cancer awareness levels in high-risk adolescents and young adults.
  • The study only enrolled mothers who had been tested within the last 5 years and one of their children. Children were only interviewed once. A longer follow-up is needed to conclude that genetic testing disclosure does not affect the long-term health of adolescents and young adults.

Context

When one family member has a personal or family history of breast or ovarian cancer or tests positive for an inherited mutation in or another high-risk gene, other relatives also are at risk of developing cancer and inheriting the same mutation. However, little is known about how younger family members react to this knowledge. A previous study showed that some adolescents and young adults make healthier lifestyle choices, such as not smoking, after learning about their possible inherited risk for cancer. Other studies have shown that young women from high-risk families might dwell on their risk and perceive it as higher than it actually is, leading to anxiety and apprehension about their health.

This study adds to the small body of research that aims to understand how teens and young adults react after learning about their family’s cancer risk. The study found that overall, telling adolescents and young adults about hereditary breast and ovarian cancer does not harm their behavior or quality of life. Knowing about their risk also increased the youths’ awareness of and knowledge about cancer, what causes it and how it can be prevented.

In general, children respond well to learning about their familial cancer risk. However, the researchers observed significant differences in cancer understanding and perceived cancer risk based on age and biological sex, as well as maternal genetic status and cancer history. Even so, these differences did not affect the behavior or quality of life of children in this study. More research on this topic is needed to confirm these conclusions.

What does this mean for me?

If you are a parent who has a known inherited high-risk mutation or a personal or family history of breast or ovarian cancer, you might struggle to know when to communicate the risk to your children. This study shows that teens and young adults generally respond well to learning about their genetic risk for breast or ovarian cancer.

Children of mothers who tested positive for mutation were no more or no less likely to act in ways that could prevent cancer compared to children of mothers without a mutation. Importantly, knowledge of a mutation did not affect their immediate well-being.

Beginning conversations in adolescence about familial cancer risk could lead to more open communication later in life about genetic testing, screening and preventive options. However, speaking with your child about their cancer risk is a highly personal decision, and connecting with a genetic counselor might help you navigate such conversations.

Reference

McDonnell GA, Peshkin BN, DeMarco TA, et al., Long-term adaptation among adolescent and young adult children to familial cancer risk. Pediatrics 2022; 150: Article number 2. Published online July 21, 2022.

Disclosure: FORCE receives funding from industry sponsors, including companies that manufacture cancer drugs, tests and devices. All XRAYS articles are written independently of any sponsor and are reviewed by members of our Scientific Advisory Board prior to publication to assure scientific integrity.

 

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posted 10/11/2022

This article is relevant for:

Mothers who have had genetic testing for BRCA1 or BRCA2 whether or not they have been diagnosed with breast or ovarian cancer

This article is also relevant for:

People with a genetic mutation linked to cancer risk

People with a family history of cancer

Previvors

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Questions To Ask Your Doctor
Questions To Ask Your Doctor

  • When and how do you recommend telling my child about their cancer risk?
  • At what age should my child consider genetic testing and/or screening?
  • What resources are available for support with communicating cancer risk to my children?
  • What resources are available to help my child cope with their cancer risk?

Who covered this study?

U.S. News & World Report

When genes raise a mom’s risk for cancer, is it OK to tell kids? This article rates 5.0 out of 5 stars

Georgetown Lombardi Comprehensive Cancer Center

Informing children of a mother’s genetic cancer risk does not impact their health behaviors This article rates 4.0 out of 5 stars

How we rated the media

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